I say it to parents who are at their wit’s end and I say it to those who are hanging on by the frayed edges at the end of their ropes.

As a society, we are particularly fond of saying it after the fact.

“Why didn’t someone help?”

Once something happens that jolts us from the pretense that we are not fundamentally interconnected – that an individual’s safety isn’t our collective safety, that others’ mental health isn’t really our concern, that we, as humans don’t need to help one another in order to survive – we become an angry mob of Monday morning quarterbacks asking, “Why didn’t anyone help?”

(We are anyone.)

It’s so easy to keep the stories at arm’s length when they’re Other People’s Stories. It’s easy to demonize the parents or the teachers who must have missed the signs they should have seen (blithely ignoring just how many of them saw the signs clearly and pleaded for help that never came.) It’s so easy to call the homeless guy who talks to himself on the corner every morning a worthless bum because, well, look at him, right? (No.)

It’s easy to say, “Why didn’t anyone help?” when you don’t think that you, we, all of us, are anyone.

So what happens when we ask and no one listens?

This.

John is 34 years old. He is bright, funny and generous. He is a good man. A shirt-off-his-back guy who once spent an hour searching the Alamo’s gift shop for the one stuffed armadillo that didn’t have any rogue strings on it because he knew that Brooke couldn’t tolerate strings. That’s John. He’s loving and gentle and without a doubt, the best boyfriend my friend Michelle has ever had.

In high school, he was diagnosed with Generalized Anxiety and Depression. At 28, he finally had a name for the rest of it. Paranoid Schizophrenia. He sees a doctor every three months. He is on medication that normally keeps his symptoms under control.

He is any of us.

This weekend, he reached a breaking point. He knew he needed help, and, God bless him, he had the courage to ask for it. Think about what it means to walk into a facility and say, “I am a paranoid schizophrenic and I need help.” Please don’t just keep reading. Think about what it means. It’s terrifying, isn’t it? The idea that help might well be “You can’t leave here until WE decide you can.” He knew that. He went anyway.

He answered the questions. He was painfully honest.

Yes, I’m having suicidal ideation.

Yes, I have been sexually abused. It was a church elder. I was 13.

Yes, I have hallucinations. Yes, they’re getting worse.

I’m scared.

The paranoia is eating away at me.

For the first time in his life, he actually wanted to be put on the dreaded 72 hour hold. He knew what he needed and he was asking for it. How many times have we jumped up and down in celebration when Brooke was able to tell us what she needed? How many times have we said, there are no more important skills than self-awareness and self-advocacy? Inside a condition that challenges self-awareness like none other, he Knew He Needed Help. And he asked for it.

The response was a thundering, deafening silence.

“I’m sorry,” they said, “we have no room for mental health cases right now. Do you need detoxing from anything?”

He didn’t, so they sent him home.

No referral.

No transfer.

No help.

Just silence.

We can rail at the injustice of John’s story all we want. We can throw our hands up to the sky and bemoan the disastrous state of “the system.” But until we understand one thing, nothing is going to change.

We are no different from John. A bright, funny, generous, gentle, loving guy who happens to live with some pretty daunting challenges.

The stigma that we assign to mental illnesses is what allows us to sit by while people like John are turned away without help. Because the moment that we all stood up and said, “This matters,” we could change it.

But instead we cling to the stigma. It’s comforting to believe that We are Us and They are Them and We could never be Them. We imagine that there are people who are “beyond help.” We believe that they are somehow worth less, worthless, because they are ill.

So we scream into Op Ed pages when something happens – when there’s an event that threatens Us – and then we leave the house and we walk by the man on the corner who argues with the shadows. We shake our heads at a broken system and … we … keep … walking.

Why didn’t anyone help?

Because they – no, We – were believing that we weren’t and could never be John.

We are all John.

And we are all in this together.

If you need help:

The Information HelpLine is an information and referral service which can be reached by calling 1 (800) 950-NAMI (6264), Monday through Friday, 10 a.m.- 6 p.m., EST or by email at info@nami.org

* John allowed me to share his story here in hopes that we can finally begin to break down the stigma of mental health in this country. I applaud his bravery and hope that you will join me in letting him know that he has our gratitude and unequivocal support.

Please tell me he got help. Is there more than one place? Did he at least get a med adjustment? I work in gero psych in a locked facility and I know!!!!! I get it! They walk the fine line and the fine line is often a razors edge and their balance varies. Please tell me at least out patient was there for him. We has several options here but I am sure they also can get full. I will pray for a safe outcome. It is not like they can just choose wellness or choose not to listen to the chaos. The chaos is real! Really real! That is the nature of schizophrenia.

At least for kids right now, no usually means no. No help and no nothing else. I know many kids who are refused hospitalization because they are too complicated and it really won’t help them anyway. Basically, if your child has mental illness and doesn’t recover in a way that works with the programs available you are sent home. Don’t get me wrong, you are sent home anyway. So I hope John got help but I’m pretty sure that no beds means no beds. It means you are on your own or it means that your family will try as best as they can. People are not sitting with you to make sure in your paranoid state that you can figure out more options or more help. Everyone goes back to work.

This is such truth! Thank you for sharing! Mental Health should not be singled out, our brain is an organ, just like a kidney, a liver or any other organ in our body. It is the single most important organ it runs the show everything. How people can think that it would never need treatment is beyond me. I am clinically depressed and I have anxiety disorder just like John, some degree we are all John! Kudos to you and him for opening this door for discussion.

Thank you John and everyone for the heart and courage to share. I hope you are getting the support you need. I hope it helps to know we are proud of you and rooting for you even if we only know about you from this blog post. All of us can relate in some way and we all have a duty to better support each other. Diary of a Mom’s blog is one of the many important efforts our community is taking to end the ignorance that causes people to fear and separate ourselves from each other. Never give up.

Prisons have become our mental hospitals. Because we are too “compassionate” to have mental hospitals any more (and no, I’m not saying they were wonderful places) far, far too many people are left high and dry like John: Needing help but unable to get it, or getting a semblance of it in jail. A staggering percentage of people in jail have mental illnesses.

I have a mentally ill teen. It’s very difficult to get him help and the help that’s available is almost nothing. When things are going well, he gets a psychiatric appt. once a month and a therapy appt. once every week or two. That’s, at most, six hours a month for a major psychological problem. The rest of the month he is at home and we are supposed to figure out how to help him ourselves, every hour of every day. Our son is non-compliant but not oppositional — his way to resist treatment is to do nothing. That’s difficult for us but what about people whose children or adult family members fight with them all day long? Or who run away? Or who steal things? Or who destroy their possessions? Or who are hypersexual and expose themselves or have sex with strangers? Or who lie and say they are being abused or beaten? Or who won’t bathe? Or who spit and scream? Or who attack others? If you don’t have a mentally ill relative, you may not know this — but people like that are sent home for their families to deal with 24/7. THERE IS NO HELP. The only help available is emergency help, and all it does is attempt to stabilize the person enough for him or her to leave. What residential care remains is rare, astronomically expensive, and hard or impossible to get into. Those who get it are often the worst cases. Are you ill but not among the most ill? Too bad for you.

Last year we visited a county mental health agency. It was our first time anywhere outside of private practice, and most people there were adults. Would you set up a system where mentally ill people are in charge of arranging, showing up for, and paying for their own care? That’s what we have right now. Some of the people seemed find and some were clearly hallucinating or having other problems. Some had family members with them, but a family member has no legal abiity to make them go to treatment. One woman was being belligerent and yelling at everyone she saw. She is in charge of her own care. And these are the lucky people receiving care at all. So many, like John, go for help and are turned away.

“On my blog, A Diary of a Mom, I recently wrote the story of a concurrently heartwarming and heartbreaking interaction between my 10-year-old daughter and a homeless woman who was huddled in front of the Church of the Covenant on Newbury Street in Boston. In that post I made reference to an article that I’d recently read here on HuffPost about a sheriff in Cook County, Ill.

The sheriff, Tom Dart, is threatening to sue state and local government officials. Why? Because, according to the article, “the county jail is so overwhelmed with people whose offenses are more attributable to mental health issues than criminal impulses that the facility has become a source of mental health care for the city, and he’s sick of it.”

Dart says that the system “is so screwed up that [he’s] become the largest mental health provider in the state of Illinois.”

The article goes on to say:

[O]f the 11,000 prisoners detained at Cook County Jail at any given time, Dart estimates that about 2,000 suffer from a serious form of mental illness. At an estimated cost of about $143 per detainee per day, the overflow from the nearby state-run Elgin Mental Health Center, which can handle only 582 patients at a time, stands to put an undue burden on the jail’s resources.
ABC Chicago interviewed some of the many repeat offenders who spend time in Dart’s jail, several of whom described it as one of their only options for consistent access to mental health care and medication.

“What ends up happening is, there’s no safety net to catch them, so they end up committing crimes, getting swept up by the police and coming to jail,” jail psychiatrist Dr. Jonathan Howard told ABC.”

Dear Jess. This made me cry. As a mental health professional, I too fall short and your words reminded me of the why and the need to help and ask for help. I read it aloud to our mutual friend Barb. She was all smiles because Barb knows theses truths well and loves hearing them retold. Thank you. Citing you in Ch 1, Lois

I too have been in this situation many years ago, spiraling out of control due to an emotionally abusive relationship wreaking havoc on my prone to severe depression mind, went to check myself in to a psychiatric program…i wasn’t suicidal enough. I am them, my autistic children are another them. Most of the people we interact with daily are capable of being a “them” given a set of circumstances.

That story is a sword through my soul. It is the living, breathing reality of the absence of help available. We have one year until she turns 18. One year.
I was already working my tail off to raise attention, awareness, support, education for autism… in a rural, uninformed, largely uneducated corner of America. Now, I have added mental illness to my battle cry. With my daughter’s permission and participation, we share our story, over and over and over, to anyone who will listen. To family, friends, strangers, school teachers and administrators, churches, and ANYONE who seems the slightest bit open hearing about the darkness we navigate. People ARE listening. With compassion. With horror. With shock. With indignation. With love and acceptance of a real person in the grip of unspeakable torment. We are determined to put the truth right out in the open, in the glaring spotlight, and we don’t mind making people uncomfortable. THAT is what it is going to take. No more shame. No more secrecy. No more isolation. No more darkness. Just light.

The mental health system in this country is a travesty. For future reference though he can go to the ER and they will hold him until a bed becomes available. It’s better than the alternative… even though it’s not perfect. 😦 I’m sorry for him and I applaud his bravery.

What I want to know is if John did eventually get the help he needed? I know first hand how scary this can be, 4 years ago my husband was put in a psychiatric facility for suicidal tendencies brought on by his undiagnosed (at the time) major depressive disorder. 911 was called several times and after numerous visits to our house by sheriff deputies my husband was finally admitted to a hospital in our area. It has been an uphill battle but once treatment began we had a framework to work within. It hasn’t been all peaches and cream but we soldier through somehow. I will agree that it is not always easy getting the help you need and this is where we as a society are failing greatly, sad state of affairs.

You sound like a brave man. We need more brave people in this world. I am so sorry that you were unable to get real help. I want you to know that as far as I am concerned, you are worthy of any and all help you can garner. Goodness knows this illness is not anybody’s choice. Please continue to reach out to good people like Jess and Michelle. Eventually somebody will know somebody or something that can become pivotal in your receiving meaningful care. Believing for the best.

For those wanting a follow-up (I completely understand, I would too)
It was not a hospital. We realize now that we would probably have
had better luck if we would have gone that route, but he is terrified of hospitals, and they tend to intensify the paranoia.
Instead, we chose a place that has an exceptional reputation for being a
mental health/addiction facility. Since he did not need to “detox”
they had him sign a paper (WITHOUT a promise not to harm clause)
and sent us home.
There were some long nights…talking, crying, working through
what we would do if it came to that again. This incident was
caused by a specific trigger. One that he admitted to the intake
psychologist. We took all steps possible to make sure that trigger
could not happen again.
This is a man that I love with all of my heart and soul.
One that I would do ANYTHING for.
One that knows all of those things…and I try to remind him on the days that he finds it too hard to believe.
We are both very fortunate that my parents feel the same way
about him and are more than willing to advocate when needed.

What baffled me most was when the psychiatrist that saw him after
the psychologist met with him was so dismissive…even belittling.
There was no offer of even ONE medication, ONE pill, ONE shot of
something to help him relax, to help get things “back in order”.

We have made it through this week…and we plan to make it through
many more.

Right now, he has a F*&% the system attitude (to the medical
people that have responded, we know it’s not all of you, we
just wish there were more LIKE you.) He left there
feeling as bad, if not worse, about himself than he did when we
went in. Essentially it felt like being told “you’re not worth it.”
NO ONE should ever be made to feel that way.
I do my best to make sure he knows on a daily basis that he IS worth
it, or I wouldn’t still be around. My love for him surpasses any
stigma there may be. It pushes me to fight harder, to find people
that are willing and able to help us push the system if/when the
need arises again.

I am thankful, SO thankful (and I tell him this regularly) that
he is willing and able to share what is going on with me. Trust
is a hard thing for everyone, but when there are additional “issues”
it can be even more difficult. I am honored that he puts that
kind of trust in me. We have created our own safety…and I always
hope…day in and day out that it is enough…and it is most of
the time.

So, no, we were not given any options…at all.
We are fortunate in that we have a handful of people that are
willing to help and stand up. Jess, being one of them. Thank
you woman. We love you.

I received a link to this post from an online support group of mine. I am struck by the unifying quality of the writing itself as well as the bold position on this demoralized topic. A true call to arms…

You see, I am a coward. I have bipolar disorder and have battled quietly as was the unspoken requirement of well, everyone. I was content with this arrangement until my child, too, was diagnosed with this most shameful mental illness.

I realized I was contributing to the stigma myself. How dare I? I decided to use my voice and force the world to accept my beautiful, brilliant child. We wore the ribbons, raised the dollars, walked the walks. Be the change, right?

I brought about so much awareness that I lost my important science job and my licenses to practice important science were investigated by a national governing body for exactly one reason: I have a mental illness.

I changed my mind about throwing my brilliant, science-loving child under the bus before I unintentionally closed any more doors in his face. We keep secrets now. Schools and teachers are kept in the dark for fear someone will put my scientist in a small room with play-doh and leave him there. Maybe I am doing more harm than good. Probably. I’m just not brave enough to be part of the solution.

Sometimes it is hard to know what is the right choice for your child. You make the best guess you can and try to support your child the best you can. Then you cross your fingers and wait. I think that is one of the trickiest aspects of parenting. Not knowing whether you are making the right choices. As long as you know your diagnosis and your child’s as well, it sounds like you are making the best decisions you can. If you have professional counseling, I hope they are helping you to see that.

I have spent so much of my high school and college career waiting until it was too late to ask for help. I also have experienced the reality of being “them,” and an autistic and a Buddhist man. I feel like to some, everyone who isn’t in my mother’s neighborhood, city, or clique is “them.” We do not help out the world because people in it look different or talk different from us. People make the same listake with autism and wonder why no one is helping when they are affected by it. As one voice once said, “They came for the Jews, Gypsies, communists, and trade unionists, and I didn’t speak up because I wasn’t one of them. And then they came for me, and by that time, there was no one to speak up.” It is all about raising our voices today, whether about Autism Speaks, anti-vaccine activists, segregated education, or discrimination. When a man can go to a health center with no referrals or recommendations, there is clearly a problem, and people such as John have to raise their voices until they are responded to. Seeing John’s treatment, it is little wonder many people do not ask for help, and frequently we turn to autism organizations that spend more on their executives’ salaries than they do on services for autistic people without putting any pressure on the U.S. government to make all autistics eligible for publicly supported services without having to fight their legislator, while deviling groups that advocate for autistic services like the Autistic Self-Advocacy Network and the Autism Women’s Network. And then when we need to fight for our child or our loved one’s autism services, we wonder why no one has the support or leverage to help us. Until this phenomenon has been mitigated, it will be an uphill struggle for millions in the autism and mentally ill community to be heard by the people who have the ability to change their situation.

As a parent to a child – no – now considered an adult because he is now over the age of 18 (chronologically age 20), when you ask for help as I did recently …. I received a threat that they would take him away…. 302 him. He recently had a wisdom teeth extraction and was in severe pain – also chewed through his tongue (5″ deep laceration). Took him to the emergency ward – basically was sent home with two needles and vials of ativan. Help? Hysterically I took my manic son back home – only to bring him back the next night frantic b/c I couldn’t handle how he was handling his pain. They almost took him away from me. They wanted to place him in a psych ward. I asked why they wouldn’t admit him and treat him for pain. I was told it was not medical. Not medical? He was in pain… his tongue was almost in half – his wisdom tooth extraction was horrid for him and he couldn’t speak because he has no language. I recently took his twin (yes – the one who can speak) to have his wisdom teeth removed three weeks later (just a few days ago) and received completely different care at the oral surgeons office. This time they seemed to care… Asking for help in all the systems with a young adult who has autism and mental retardation can only get you in trouble is you truly love your child. If I would have called 911 (I knew better) – I was told by my case manager that the police would have taken him out of my home in handcuffs. Be weary when you ask for help… know the systems… Don’t ask if you don’t know how the systems handle different types of calls. My son could have been taken away from me and sent to a local home where they do not know how to handle severe autism. A friend of mine whose child was taken there (against the parents will) was physically restrained – released black and blue from head to toe and 40 pounds lighter (literally skin and bones)… This young adult child was never able to return back to her loving home… this young adult is now in a residential setting, in my humble opinion, because of the treatment that this person received while being restrained. Be careful…. don’t trust anyone when you are dealing with agencies who do not know what to do. I am still bringing my son back from his manic cycle from the wisdom tooth/tongue laceration. He is still healing. He is now starting to sleep a few hours in the night. He is just now able to move his tongue again. It has been three weeks to where I almost could have had a nervous breakdown due to the 24/7 care that he needed to make sure he was safe. Some people in the field care – but they aren’t paid enough to really stay there long enough. The field is hard to work in and most burn out before their time. Mental health is exhausting. I will never be the same person I was before autism struck. I mean the severe stuff – feeding issues, sleeping issues (or no sleeping), attending to a task for no more than a few seconds, planning every second of every day, locking each door in your home with either combinations or keyed entries, safeguarding the doors to get out of your home so that elopement isn’t an issue, self care (toileting, bathing, feeding, dressing) to the n’th degree… doing it the same over and over again until you just want to burst… ask for help? I could write a book on how not to ask for help because of fear now… fear that someone will come and take him and restrain him beyond his means – to his death (which would be forthcoming by him trying to get of the restraints b/c he has no shut off valve – fight or flight) – and then mine. He is my life. Be careful – the systems are there – not all are equal… I had to share.

Even though I read a lot – I don’t post much – But today I have to. I’ve been bursting at my seams to share this … One of the major projects my company is working on is a mental health facility. In a review of the project recently my co-workers made some disparaging comments about the clients of this facility saying things to the project manager like “so you mean you have to work while crazy people are just walking around?” It made me physically shake and feel sick and I really wanted to say something but I knew if I opened my mouth I would burst into tears – and I didn’t want to cry since I was at work. All I managed later on was to say to one of the ppl who was there was that having mental health issues does not mean you are crazy and it certainly doesn’t mean that you should be feared or locked away somewhere so that other people won’t have to interface with you. I don’t think it meant anything to them when I said it. That person knows I have an autistic son so they probably just dismissed my comment thinking that I was being overly sensitive. But my son (or anyones child) could need a facility like that one day. We really need to do something about changing ppls attitude towards mental health concerns.

It’s been a few days but it still hurts and I still feel like I should have done or said more.

@the jay train – you did great! There are days when I can’t even get a peep sound from my voice box b/c I will flood the room with tears. The first time I heard someone say the word “retarded” as though something was atrocious it cut into me like a knife (especially when my own son has a medical diagnoses of profound mental retardation and severe autism). It was a close family member too! I think you did a great job … who knows? Behind the scenes you may have started something – perhaps that person went to someone else and said the same verbiage you said and then that person went to someone else etc etc. You may have taught quite a few people that mental health is just that – mental health – not to be feared nor disrespected. Every human deserves dignity! No matter who you are or what you have added onto your name whether it be m.d. or dx of mental disorder. When you are at the stage of your life when own child (who is now age 20) may have to be placed due to many reasons too numerous to even try to write – that is when one realizes that life is so precious – no matter what it brings. For now – I will fight to keep him with me for as long as I possibly can – but only then when someone is placed in that situation will they ever understand the true meaning of what you are trying to convey… Sorry to say – however I commend you for trying – you never know what happened behind the scenes!!!!!!!

This, guys, is one reason why I fear asking for help . . . I fear I will be told “no” and there will be no options available for me. Or that I will be told “yes, but I hope you realize how much this is putting me out.”

I tried, and failed, to complete court reporting school because I wanted to get a job to make enough money so that our son would not have to rely on a public health system that I fear will not be there for him when he needs it. That all blew up in my face after six years, leaving me with a mound of debt, and I have no idea how we’re going to pay it back. When you have to fight for everything, you eventually get tired of fighting.